hearing aids

Doing My Best

By India Mattia

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My hearing loss appeared suddenly, at age 61, when I woke up for work unable to hear in my right ear. With no history of difficulty hearing, I was completely stunned. Did I, I wondered, damage my ear with loud music in my headset yesterday?

In a panic, I requested an immediate appointment with my primary care doctor. He prescribed antibiotics and recommended I see an ear, nose, and throat doctor (ENT, or otolaryngologist) if my hearing did not return.

The antibiotics did not help my hearing, and upon the visit to the ENT I learned I had become completely deaf in my right ear and had developed a small hearing loss in my left ear. She suggested injecting steroids into my right ear to restore my hearing. I was apprehensive about having a needle stuck in my ear, but the doctor assured me that the novocaine would numb any pain. I agreed, and the procedure made me feel dizzy.  

One week and two injections later, my hearing had not come back. The ENT could not identify the cause with certainty. She thought it might be an infection. But I couldn’t think of ways I would have gotten infected, and to me I didn’t see any obvious signs of an infection.

Soon my hearing loss was accompanied by vertigo, tinnitus, and ear pain. Every time I moved a certain way, I felt my head spin. I relied on the keep the radio to block out my tinnitus and took Tylenol to dull the pain. My ENT referred me to a specialist at John Hopkins Hospital, but the first appointment I could secure was two months away, in August.

Meanwhile, I began to adapt to the challenges of hearing loss in my daily life. No longer able to hear my alarm clock to wake up for work, I switched to a vibrating pillow alarm. I watched TV with Bluetooth headphones to avoid disturbing my family with the high volume I needed to hear. I couldn’t manage noisy spaces, though. Restaurants, outdoor events, and loud traffic were unbearable to me.

I began to feel embarrassed and ashamed of having to ask people to speak louder or repeat themselves. I was afraid to tell my coworkers at the real estate office where we worked, but confided in my supervisor, who was sympathetic. Outside of work, my husband often advocated for me by telling others about my hearing loss.

When I thought circumstances couldn’t get worse, I learned my office was to close in July, leaving me without a job. I hoped to make ends meet with the severance pay and unemployment compensation while looking for work.

The John Hopkins doctor confirmed an infection had caused permanent sensorineural hearing loss in my right ear. He recommended a hearing aid, but I cannot afford one.

I remain without a job and my unemployment compensation has ended. I have had a few job interviews—but have kept my hearing loss a secret—and have done my best understand the interviewers’ spoken questions. Aside from my hearing loss, age discrimination makes job hunting difficult. I don’t qualify for social security disability benefits because my hearing loss is only in one ear.

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All this said, my hearing loss has led me to make some positive lifestyle changes. I read more often than before and have swapped rock and roll for soft music. I’ve reduced my sodium intake and eliminated caffeine which is supposed to improve blood flow to the ear. I ride an exercise bike and have taken up t’ai chi to stay physically active.

I applied for early social security retirement since I will be 62 in June. I am also applying for social security disability for both my hearing loss and asthma, which I have had since my late 20s. I am hopeful something will come through. My story may not have an inspiring ending, but I’m doing my best and looking toward better days.

India Mattia lives in Maryland.

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A Woman's Canine Ears

By Barbara M.      

I always knew I wanted to work with people after high school. Though I struggled throughout my education, I graduated, miraculously, thanks to my supportive family and hearing aid technology. With a high school degree I was eligible for Vocational Nurses (VN) school, a career I maintained for over 23 years.

My sensorineural hearing loss was diagnosed at around age 4, well before newborn hearing screenings were commonplace, in 1954. “Barbie needs to see your face when you talk, Mommy,” my sister announced one day, cluing my parents into a possible hearing problem.

Barbara and her current hearing dog (HD), Fallon.

Barbara and her current hearing dog (HD), Fallon.

I wore behind-the-ear hearing aids and equally relied upon speech-reading, but academics were a constant challenge. Math was the most difficult for me because my teachers often faced the chalkboards, not us students, while writing and explaining equations. My family spent many hours tutoring math to me to ensure I passed.

After high school, I was employed as a nurse’s aide in a long-term care facility. I enjoyed working with and helping the elderly patients, which encouraged me to apply to VN training school. I entered with strong professional references and my two instructors were aware of my hearing loss, so I felt secure.

During the last week of the six-week academic training, which immediately precedes clinical duty training, one of the VN instructors requested a private meeting. She had concerns about my hearing loss. “What if you’re in a situation where you could not hear a patient call/cry out?” she pressed.

Devastated, I reasoned with her hoping she would allow me to begin clinical duty on a trial basis to prove my ability to meet their expectations. I suggested this even though I knew in my heart it would personally difficult to withstand 17 additional months of required training under her surveillance. She pushed back, expressing I could be jeopardizing a patient's life or she could lose her job. I was crushed! I ultimately chose to withdraw from this VN school, knowing I’d be accepted to another school. I was—and graduated to go on to pass the California State Board for licensure.

Some time after my licensure, I was driving past my first VN school and a thought occurred to me; I needed to share my good news with my once doubtful instructor. The instructor with whom I spoke remembered me and congratulated me on my achievement. We chatted amicably before she revealed that the 'other' instructor had since resigned—due to hearing loss she experienced the year after I withdrew from the VN program. I was in disbelief! I hoped she, too, had not faced discrimination. Empathetically, I expressed my concern that no one should be discriminated against because of their disability.

About halfway into my nursing career, in the 1980s, I found myself with the need to to hear more and relied more on speech-reading. I often felt tired and mentally overloaded in noisy environments. One of my biggest challenges during this time was caring for my son, born in 1987. My husband, a firefighter who often worked 48-to-72-hour shifts away from home, cleverly devised a sound-activated light system to alert me when our son made noise or cried in his crib. This was a perfect solution, I thought—except in the case of power outages.

I needed to find another way to alert me to my son's voice at night. It came to me the following year while reading National Geographic, where I saw an advertisement about Canine Companions for Independence (CCI), a nonprofit organization that enhances the lives of people with disabilities by providing them with service dogs and ongoing support. I applied and was paired up with Ronnie, my first Hearing Dog (HD), who helped me immensely by alerting me to important sounds within my home.

Gradually and for unknown reasons my hearing loss continued to decline and I found myself avoiding noisy establishments & places. In 1999 I made the decision to resign from employment so as to ensure quality patient care I no longer was able to auscultate (hear) important lung sounds using the stethoscope. With my skills as a nurse, I chose to transition to be a care provider for my aging parents-in-law, and later, my mother.

I am personally proud that I was able to remain productive after my resignation, largely because of the assistance of my HD Ronnie and later, Fallon. Having been highly trained I considered them to be my canine-ear-partners, they alerted me to many important sounds such as doorbells, knocking, whistling tea kettles, and my telephone's ringing.

Ronnie and Fallon helped me to overcome my hidden handicap, a personal milestone towards acceptance of my hearing loss.

Barbara lives in Oregon with her husband, Dan.

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HHF Endorses California Pediatric Hearing Aids Bill

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

Hearing Health Foundation (HHF) has formally endorsed AB 598, a bill in California calling for the expansion of hearing aid insurance coverage for children.

California resident Elizabeth Keithley, Ph.D., Chair of HHF’s Board of Directors, recently wrote a letter of support to Assemblywoman Lorena Sanchez, who has stopped earlier versions of the bill. You can read her letter below.

If you live in California and would like to identify and contact your representative about AB 598, you may do so here.


Letter of Support from Elizabeth Keithley, Ph.D.

Dear Assemblywoman Lorena Gonzalez,

Thank you for the leadership you provide to San Diego. I write to you as the Chair of the Board of Hearing Health Foundation (HHF) and Professor Emerita of Surgery/Otolaryngology Head and Neck Surgery at the University of California, San Diego, School of Medicine. I am requesting your support for AB 598, introduced by Assemblyman Richard Bloom, which will require insurance coverage for children’s hearing aids in our state.

HHF is the nation’s largest nonprofit funder of hearing and balance research. Our scientists’ work has led to development of cochlear implants, innovative ear treatments, and progress toward biological cures for hearing loss. We work tirelessly to better the lives of the 50 million Americans with hearing loss.

Beyond research, HHF has been a longtime advocate for Universal Newborn Hearing Screenings, federally mandated in the 1990s. Identifying hearing loss at birth enables parents to promptly pursue intervention for their child. The first six months of a child’s life are the most critical in forming auditory pathways in the brain to hear.

The majority of individuals with sensorineural (permanent) hearing loss, including children, can benefit from hearing aids as treatment to communicate, learn, and develop healthily. A pair of pediatric hearing aids can burden a family by as much as $6000 per pair, which generally must be replaced every three to five years. This is an out-of-pocket expense of over $40,000 before a child reaches 21.

This immense financial barrier to treatment result in absence of treatment that then inhibits children’s social, speech and language development, and academic performance. For an individual child who does not receive intervention, the estimated cost of special education and loss of productivity is $1M.

Right now, California urgently needs the help of leaders like you to relieve families from the stress of choosing between hearing aids for their children and other health necessities. The strength of the future CA workforce depends on it.

Thank you for your consideration. I truly hope you will act to support California’s children through AB 598.

Sincerely,

Elizabeth M. Keithley, Ph.D.

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Comfortable

By Joe Mussomeli

Being uncomfortable can be nerve-wracking, strange, and sometimes scary. For my brother, Alex, 14, being uncomfortable is all of these things. Born with a hearing loss, Alex has felt uncomfortable so many times in his life it’s impossible to count them all. He recently found himself in an especially uncomfortable situation when he was invited for a swim and sleepover at a friend’s house.

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To most teenagers, these activities aren’t uncomfortable; they’re fun. But when Alex received his invitation, he was overcome by anxiety related to his hearing loss. He worried he’d take too long to change into his swimming clothes, which include a shirt that attaches to his waterproof cochlear implant (CI). He dreaded others seeing him wear this. He feared he wouldn’t understand every word the other kids said in the pool. Above all, he was nervous the other kids would distance themselves from him because he was different.

Swimming wasn’t even the most distressing part. It was the mention of a sleepover that troubled Alex most. Just the mention of the word “sleepover” made his stomach tie into a knot. Every night, he removes his CI and hearing aid. He places the devices in a dry and store dehumidifier box, powers on the box, and then, finally, goes to sleep. Carrying out this routine at a sleepover would be, in theory, extremely difficult. Alex would have to keep his hearing devices on while talking to his friends at night. At the conversation’s end, Alex would have to take off his devices, but if it resumed, he would have to go through the hassle of putting his devices back on, or he would have to be left out. The whole situation would be unconventional and nerve-wracking for him. Essentially, it would be uncomfortable.

Alex was so uncomfortable that he almost declined the invitation until our dad pointed him in a different direction. The morning before the sleepover, Alex asked Dad if he should go to his friend's house. My dad told him that he should. Alex was quiet for a moment before he poured out all of his anxiety. He told him about how nervous he was and all of his other discomforts. Dad responded, “I won’t tell you what to do, but I will tell you this: Do you want to be uncomfortable your whole life, or are you willing to take a chance?” He left Alex to think over these words.

In the end, Alex didn’t go to the sleepover, but he went for a swim. Yes, it did take him longer than the other kids to change for the pool, and yes, he didn’t hear every word his friends said in the pool. But he still went, he dove into a pool of discomfort, dealt with it, and to his surprise, he had a bit of fun. He texted my dad an hour later asking if he could stay until at least 9 PM. My dad replied with three words: “If you’re comfortable.” Alex replied with two: “I am.”

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ChEARs to Our Hearing

By Lauren McGrath

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To extend our celebration of World Hearing Day (March 3), Hearing Health Foundation (HHF) has partnered with the innovative Class I hearing aid manufacturer Eargo to raise funds for hearing loss research and awareness.

Eargo launched the ChEARs to Our Hearing Facebook fundraising campaign Monday, March 4, and the company is generously matching all gifts made up to $1,000.

In alignment with HHF’s 2017 survey about barriers to hearing loss treatment, Eargo’s Audiologist, Steve Eagon, says, “Our consumers are most concerned about the price of hearing aids. User-centric innovations driven by HHF’s scientific research—specifically through its Emerging Research Grants (ERG) program—will ultimately advance more possibilities for hearing aid technology,  eventually driving down costs.”

HHF also champions the importance of treating a hearing loss to maintain one’s quality of life, or, as Eargo’s mission statement reads, “hear life to the fullest.” An untreated hearing loss can increase one's risk of experiencing cognitive decline, dementia, falls, social isolation, and depression.

Eargo also shares HHF’s motivation to reduce the stigma of hearing loss. “There always has been, and still is, a lot of stigma around hearing aids. As a society, we're focused on looking and feeling young, and using hearing aids are often seen as a sign of submission to old age. Instead of investing in one of their senses, people often deny their hearing loss—by turning the volume up, asking people to repeat themselves, and unfortunately avoiding the situation rather than dealing with it head on,” Eagon says.

HHF is deeply grateful to Eargo for their decision to support hearing loss research and awareness. HHF kindly invites our readers to make a contribution to ChEARs to Our Hearing on Facebook. Thank you for your consideration and support of our work!

 
 

About Eargo:

Eargo is a direct-to-consumer health tech company that’s destigmatizing hearing loss through consumer-driven innovation. Eargo devices are available for individuals with mild to moderate hearing loss. The Eargo Max model was recognized as one of TIME’s best inventions of 2018.  For more, see eargo.com.

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Helping Myself to Help Others

By Ryan Brown

My hearing loss was identified around the time I started kindergarten. I started asking “what?” a lot, and I didn’t always respond to those around me. Some of my teachers thought I was ignoring them or missing instructions on purpose. At home I began to sit closer to the TV with the volume up high.

Subtle behaviors like this in a child can sometimes go undetected, much like those of a student who struggles because he can’t read the board in the classroom. Thankfully, a teacher finally noticed that I was reading her lips and recommended that I see a speech-language pathologist. Eventually, I was referred to an audiologist, Sheila Klein, Au.D. She diagnosed me with moderate to severe bilateral hearing loss, most likely caused by recurrent ear infections when I was younger.

My mom distinctly remembers leaving Dr. Klein’s office with my new hearing aids. After we walked out the door into the parking lot, I took a few steps, stopped and looked around, then walked a few more. This was the first time I heard my jacket make a whoosh sound as I moved. I spent a lot of time that day hearing new things I had never noticed before.

Soon after that, Dr. Klein came to visit my school. She explained to my classmates what it means to have a hearing loss and why I needed hearing aids. I really appreciate this gesture  because it encouraged my classmates to be more accepting of someone who was different than them.

One of my favorite hobbies is music, and hearing aids have been instrumental to helping me understand and practice it. I enjoy creating electronic songs using a production software called Ableton, which provides a means of arranging music as well as a visual representations of sound waves. This tool is crucial because there are certain frequencies I simply cannot hear, and people without hearing loss may hear harsh noises that disrupt the sound I was aiming for. This feature allows me to filter those sounds out visually. Without my hearing aids, I would have a hard time noticing these details in the final product.

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I am in my third year of medical school, pursuing a career in Emergency Medicine. I spend most of my days assisting and learning from physicians at hospitals and clinics. The purpose of this training is to eventually be able to practice and treat patients on my own.

My aspiration to work in medicine came about during junior year of high school, when I sought help from my local Vocational Rehabilitation (VR) office. VR counselors provide career assistance to people with disabilities. Medicine requires one to use a stethoscope, so the VR counselors found an electronic stethoscope and headphones I could fit over my hearing aids. The headphones can be confusing for patients sometimes, but they understand once I start listening to their heart and lungs.

I’ve really enjoyed learning about the art and science of medicine. Problem solving and building a trustworthy relationship with a patient are crucial skills which I will continue to develop for the rest of my life.

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The impact my hearing aids have had in my development cannot be understated, but communication is still difficult at times even with them in. I have learned to be patient and understand that not everyone knows what it’s like to have hearing loss or wear devices like hearing aids. Sometimes there is a need for others to speak up or face me so that I can read their lips, especially in crowded places. Having to overcome challenges like this has instilled an important trait that is essential in medicine: empathy.

Ryan William Brown is a student at the University of North Dakota School of Medicine.

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You Are the Reason

By Elizabeth Keithley, Ph.D.

Your partnership with Hearing Health Foundation (HHF) is fundamental to new treatments and cures for hearing and balance conditions.

I am so grateful you are part of our mission—which, as a hearing scientist, I have always embraced.

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Support from you creates new possibilities for people of all ages, including brothers Anthony, Andersen, and Ayden, all born with bilateral hearing loss.

The boys wear hearing aids and are happy, social, and active students in a mainstream school.

They’re fortunate to have a mother who sacrifices for their hearing health, including five-hour round trip drives to their audiologist.

I am pleased to have witnessed so much extraordinary work funded by HHF that will better the lives of so many people just like these boys.

And I know someday, hearing restoration— which already exists in birds, fish, and young mice — will be possible for millions of folks who have hearing loss.

Progress cannot happen without you.

Please, if you are able, give today to bring us closer to realizing that dream.

Your generosity is urgently needed to accelerate new treatments and cures. We appreciate your consideration to give to HHF’s life-changing work.

Thank you and happy holidays!

 
 
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Celebrating the 10th Anniversary of Grace’s Law

By Jeanine and Grace Gleba

In December 2008, a small (Christmas) miracle happened in the state of New Jersey and personally for our family. It’s hard for us to believe that it has been a decade since Governor Richard Codey said these words:

Grace Gleba (red sweater on right) looks on as HAIL is signed into law.

Grace Gleba (red sweater on right) looks on as HAIL is signed into law.

“I want to personally thank Grace and the entire Gleba family for their years of advocacy on behalf of children with hearing loss. Grace’s tenacity, and her own example of what children can achieve with the proper treatment for hearing loss, are a major reason why kids in New Jersey will be able to receive the gift of hearing for years and years to come. Grace and her family have taken personal adversity and turned it into something positive for the people of New Jersey. We all owe her a debt of gratitude.”  

The governor spoke as we witnessed the passage of Grace’s Law S467/A1571. These bill numbers are emblazoned forever in my mind.

Grace’s Law is known as Hearing Aid Insurance Legislation (HAIL) and mandates hearing aid coverage for New Jersey children ages 15 years and younger. For our family and all of the families who advocated in the state capital of Trenton with us, it was a monumental accomplishment. In fact, it took nine years to raise awareness and fight for this law to become a reality. The statistics validate this being quite a feat as only 3 percent of all bills introduced ever become a law!

On the law’s 10th anniversary, here are 10 ways you can celebrate this landmark legislation:

1) Take a few minutes to learn the history of the bill here and here. You can read the original legislation and the most recent pamphlet that the NJ Department of Human Services’ Division of the Deaf and Hard of Hearing has produced explaining Grace's Law. Take note that as a result of the Affordable Care Act, the state has made this an essential health benefit and since 2014 there is no longer a maximum benefit limit of $1,000 per hearing aid (after deductibles, copays etc.). Now that’s something to celebrate—that children now can have even better coverage!

2) Support research toward a biological cure for hearing loss with a contribution to Hearing Health Foundation (HHF)’s Hearing Restoration Project (HRP). The HRP is a scientific consortium studying how fish, birds, and mice regenerate their hearing to replicate this phenomenon in humans.

3) Do you know a child who has benefitted from Grace’s Law and is a shining example that with their hearing aids they have overcome obstacles and achieved great things? Help them join HHF’s Faces of Hearing Loss awareness project. Their participation will show that hearing loss and related conditions can affect anyone.

4) Make a difference in someone else’s life and give the gift of sound by donating old hearing aids to Hearing Charities of America.

5) Wear earplugs for a day to gain a better understanding of living with hearing loss on a daily basis and why getting fitted for proper hearing aids can improve lives.

6) Participate in Walk4Hearing events held nationwide by the Hearing Loss Association of America.

7) Tweet a message showing your gratitude for HAIL. Tag @graceslaw and @hearinghealthfn include a link to this blog post. Here are sample tweets to get you started:

  • For 10 years #GracesLaw #HAIL has helped children in NJ hear. Help spread the word by doing something from the 10 Ways to Celebrate!

  • Millions of Americans experience some sort of hearing loss. #HAIL is needed in every state. #listenupamerica

  • #HAIL Yeah!

  • I’m celebrating #GracesLaw #anniversary by _____________.

  • #GracesLaw improved my/my child’s quality of life by ____________.

  • This year I am thankful for #HAIL #GracesLaw and hearing technology #gratitude

8) Advocate like we did 10 years ago! Last year, President Donald Trump signed into law the Food and Drug Administration Reauthorization Act of 2017, which includes the Over the Counter Hearing Aid Act. Next, we hope Congress will pass federal HAIL for all ages. Hearing loss doesn’t discriminate, so why does insurance coverage? Write your legislators to let them know that this is important to you.

9) Schedule a hearing exam for you or a loved one.

10) Protect your hearing or lose it. People of all ages can be affected by noise-induced hearing loss. Turn down the volume on your electronic devices. Find more ways to protect your hearing.

This article was repurposed with permission from Jeanine and Grace Gleba. Jeanine Gleba serves as a public member on the NJ State Audiology and Speech-Language Pathology Advisory Committee. Grace Gleba is a student in the Schreyer Honors College at Pennsylvania State University, where she is majoring in communications sciences and disorders with a minor in health administration and policy.


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Communicate Effectively 
Over the Phone

By Dusty Ann Jessen, Au.D.

Even with email, texting, and video chatavailable, the humble telephone remains a primary means of communication in the workplace. Telephones, of course, render the communicators unable to see each other when talking, so they can’t take advantage of important visual cues, including knowing when it’s their turn to talk. This is especially disconcerting for those with hearing loss; however, communication breakdowns can happen over the phone even between people who don’t have difficulty hearing. Here are simple strategies to help.

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If you are the speaker, you are responsible for conveying a clear message that is received accurately. Focus on the call (don’t multitask!), and make sure the telephone receiver or headset microphone is near your mouth. Speak at a slightly slower pace and enunciate clearly. If your listener is struggling to understand, don’t just repeat what you said; rephrase it or provide additional clarification. This is especially important when conveying letters or numbers; say “C, as in Charlie.”

If you are the listener, place your full attention on the phone call. Turn up the volume to a comfortable level, and consider using the speakerphone so you can hear with both ears. If you miss a word or sentence, don’t just say “What?” Ask your speaker to rephrase the last sentence. You can also ask follow-up questions requiring a yes/no answer (easy words to understand over the telephone) and repeat back what you think you heard.

For optimal hearing—and whether your workplace environment is an office, classroom, or factory—do your best to eliminate background noise when on the phone. Turn off any distracting sounds in your environment, such as silencing a cell phone or muting your computer, or find a quieter place to conduct your phone call.

Landline phones are available with amplifiers and tone controls. Landline phones work well with the telecoil (t-coil) built into most hearing aids (ask your hearing health provider if you are unsure). The t-coil is a small copper coil that picks up the electromagnetic energy naturally emitting from landline phones for a clear signal, without needing a microphone.

If you are in the market for a new cell phone, be sure to choose one that is “hearing aid compatible,” with a microphone (M) and telecoil (T) rating of 3 or 4. Many advanced hearing aids can connect wirelessly to mobile phones, creating a convenient “hands-free” option with excellent sound quality.

These strategies can be applied to many other situations as well. Enunciating clearly on the phone will make you a better communicator all around. Getting out of the habit of asking only “What?” and replacing it with a polite, “Can you please rephrase that?” will help in any situation. Reducing background noise and taking advantage of technology can improve communication efforts for everyone.

Dusty Ann Jessen, Au.D., is based in Colorado. This article, which also appeared in the Winter 2017 issue of Hearing Health magazine, is adapted with permission from her book, “5 Keys to Communication Success.” For more, 
see 5keys.info.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

 
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Miracle Moments

By Casey Dandrea

Virginia toddler Charlotte (Charly)’s first experiences with sound using hearing aids captivated millions. The video, taken in 2017 when Charly was an infant, aired across multiple local television networks and went viral on the internet.

Photo credit: Christy Keane (   @    theblushingbluebird   )

Photo credit: Christy Keane (@theblushingbluebird)

Charly’s mother, Christy Keane, is heard fighting back tears in response to her daughter’s expressions. “I’ve never seen that face before. You’re going to make me cry,” Christy says as Charly displays a smile and her eyes light up. For the first time, Charly was visibly reacting to Christy’s voice.

Charly’s one-minute viral video debut was more than heartwarming—it was educational. With technology, children born with hearing loss can communicate just like those with typical hearing.

Christy’s understanding of profound hearing loss before Charly’s diagnosis was minimal. “I had never met a deaf person in my life and had absolutely no knowledge on hearing loss or intervention options,” Christy says. Following Charly’s birth, Christy immediately surrounded herself and family with a team of supportive specialists to earn more about pediatric hearing loss and options for treatment.

Charly was diagnosed with a bilateral profound sensorineural hearing loss at age 1 month after failing all three hearing tests as a newborn. She was fitted with hearing aids at 2 months old, which she wore for eight months prior to her cochlear implant (CI) surgery in June 2018. Christy and her husband chose cochlear implantation for their daughter because they wanted to give Charly the best access to speech and sound for her needs.

Christy and Charly. Photo credit: Christy Keane (   @    theblushingbluebird   )

Christy and Charly. Photo credit: Christy Keane (@theblushingbluebird)

Having had access to sound since infancy, Charly will enjoy the same opportunities as a child with typical hearing. Children who receive early intervention for hearing loss reduce their risk of falling behind in speech and language acquisition, academic achievement, and social and emotional development.

The video’s reception inspired Christy to chronicle her daughter’s progress on Instagram. Now with one hundred thousand followers, Christy is thankful to have touched so many individuals all over the world. Her #miraclemomentsoftheday posts, in which she records Charly’s reactions to her daily CI activation (and previously her hearing aids), are especially popular.

Christy is proud to have created a forum that provides encouragement to families of children with hearing loss. “Every day I receive a message from a parent of a newly diagnosed child and I can remember the exact emotions they are experiencing,” she says “I love to be an example of how fulfilling it is to be a parent-advocate and how quickly your perspective changes as you learn more about hearing loss and language options.”

Christy hopes to change perceptions of hearing loss offline, too. She volunteers with Virginia Hands & Voices, an organization that helps families of children with hearing loss. Ultimately, Christy is working to provide an atmosphere for families with children with hearing loss to come together to celebrate their achievements and share their experiences.

Casey Dandrea is an HHF intern studying journalism at Long Island University Brooklyn. For more on Charly’s progress, see Christy’s Instagram.

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